To My First Born Son On His 18th Birthday

18 years.

18 years filled with laughter and love and sometimes heartache and tears. 18 years of watching every milestone and “checking it off” – feeling like we accomplished something. 18 years of watching some milestones pass by and realizing we still haven’t met them and dealing with the grief that these are the milestones that you may never meet.

But as I write, I realize you have risen above my expectations I had for you and I know you will continue to. It’s because even though there are many things we may have ahead to learn there are things you have taught me and others.

…you have taught me God’s sovereignty. From the moment I held you I knew He had a plan for your life. When we found out about the Down Syndrome, I didn’t understand why God had chosen this path for you or me. As the dust settled and the tears dried there was one passage I clung to. The passage is in John 9 when Jesus heals a blind man. Although I knew that “healing” was not the answer for a genetic condition. This scripture helped me find an answer for why God chose this path. Jesus’ answer is in verse 3. Jesus’ followers were baffled. Why was this boy born blind? Obviously someone sinned . But Jesus responds “he was born blind so that he could be used to show what great things God can do.” Now 18 years later I am able to see so many of these great things. I have learned it’s not my fault or that I’m being punished . These verses remind me that your disability is anything but that. The plan God had all along for you is a gift so that you can display the works of God through your life and your unprejudiced mind and heart.

… you have taught me patience. Every step of this journey together has been slow, every milestone, every word, every year of school, every IEP – a lesson in learning to be patient in God’s timing. While I’ve spent days, months and years waiting for each step, It causes me to think how patient God is with me. So many times it takes me so long to learn things that I’m sure God feels like he has tried to teach a million times over. You are my visible reminder that God brings beautiful blessings in His time if we just wait.

…you have taught me to laugh. You are silly. Always trying to make me laugh. And always laughing. You can make anyone laugh and you know how to laugh at yourself. And when I start to take life too seriously you are there to help remind me that life is too short not to laugh a little.

…you have taught me to see things through different eyes. To catch a glimpse of what really matters most. Not the little events of life but the way these events affect our soul and others. Your concern when others are sick, or sad. The way you never want to make anyone mad. The way you put others first. I often wonder what the world would be like if we all saw others through your eyes.

…you have taught me unconditional love. You give and accept love from others with no conditions. You share love so easily and I’ve seen you hurt because of the way you love someone or something so hard. Your heart is so big and filled with so much love for the people you know. You have taught me that loving is not about what we want others to be but about loving them as they are. It’s about loving me when I have a short temper or snap at you. It’s loving like Christ … not because of anything I could do but loving because that’s what you are.

I’m reminded of the old hymn, “Come Thou Fount,” it speaks in the second stanza of raising an Ebenezer. Strange language isn’t it? The prophet Samuel set up a stone after the LORD helped Israel win a great victory. This was not without repentance and seeking the LORD on Israel’s part. They had to put away their false gods and pray. The stone, named Ebenezer, commemorated that victory, for “Thus far the LORD has helped us” Whenever the Israelites would pass by the stone, they would remember what they were capable of, and how the LORD acted on their behalf.

So you my son are my true Ebenezer. You are the physical reminder of God’s faithfulness and goodness. In 18 years you have taught me all these lessons and more. You remind me daily what the Lord is capable of doing. And you show me daily that God has and is still continuing to teach me more about Himself through you.

So HAPPY 18TH BIRTHDAY Bub. You are so loved!

Written by Leigh Ann Kaman

Leigh Ann Kaman is a wife and mom to three kids, one of which has Down Syndrome. She advocates in the special needs community and has started a ministry in her church for those touched by special needs. She is also actively involved in Capernaum, a ministry of Young Life for young adults with disabilities. Writing about her life as a special needs parent has always been her passion. 

Count Your Blessings: A Way To Stay Sane in a Crisis

Count your blessings, name them one by one,

Count your blessings, see what God has done!

When I was much younger, I rolled my eyes every time we sang this hymn at church. To my mind, the lyrics touted a solution far too simplistic for the troubles our family faced.

Even when I did as instructed, life didn’t get better.

 My dad was sick and getting sicker. My mom shouldered too much stress as she worked to feed and clothe us. The trend continued after the birth of our son. Five years and seven surgeries into his young life, life was hard and getting harder.

 So far as the count your blessings thing went, I told God to count me out.

 Then, one day the beginning of Zechariah 4:10 caught my eye: “For who has despised the day of small things?” (NASB)

Hmmmmm. 

If my response to the lyrics of Count Your Blessings was any indication, I had been despising the day of small things for years. Maybe even decades. 

Not good. Not good at all. 

An attitude change was long overdue, and it was a hard change to make. But as I began to look for small blessings, it was easier to see and delight in them. 

And then, along came COVID-19.

 The temptation was strong to stop searching for small and good things while living through such a vast pandemic. But for my own mental and spiritual health, I kept looking for and found these 10 tiny and precious treasures.

1. The ability to walk. My dad’s 38 years in a wheelchair make me grateful for mobility every day.

2. Favorite notebooks and mechanical pencils. I don’t know why speckled composition books, yellow legal pads, architectural mechanical pencils bring great joy, but they do.

3.  Ordering online. It’s fast. (At least the ordering part is fast.) It’s easy. And it’s much safer for old coots like me who want to stay healthy until the risk of catching COVID-19 go down. 

4. Our espresso machine. Several members of our household love good coffee, so we splurged on it last summer. The coronavirus shut down feels less confining with delicious espresso at hand.

5. It’s spring. More daylight and warmer temperatures bring me joy and hope.

6. Bird song. Another daily source of joy and hope.

7. Intergenerational living. We live in the same house with our daughter, son-in-law, and their two children. This intentional living arrangement began 4 years ago, and it takes work to keep things going smoothly. To us, it’s worth it. Doubly so during the shut down. Our daughter trimmed my hair a few weeks back. Our son-in-law does the grocery shopping. And water, sewer, garbage, and energy bills are split between families. Win! Win! Win!

8. Eavesdropping on a 5-year-old at play. This could have been lumped in with #7, but listening in on a child’s make believe world is so dear, it deserves its own spot.

9. Happy birthday to me. Our 2-year-old granddaughter sings this when she washes her hands. It’s too much cuteness to lump in with #7.

10.  FaceTime. We use it to connect with our other 2 grands and with my 91-year-old mom who’s in a residential care facility. Because of #7, all our grands can visit at the same time, and Mom gets to see her great-grands. More wins!

Caregiving or COVID-19 can make it hard to count your blessings, and I get that. But I encourage you to look for them, no matter how small. They have the power to keep you sane in a crisis.

Because little things matter.

Tiny things count.

Small things add up.

And you are worth it.

Jolene Philo is the author of the Different Dream series for parents of kids with special needs. She speaks at parenting and special needs conferences around the country. She recently co-authored Sharing Love Abundantly in Special Needs Families: The 5 Love Languages® for Parents Raising Children with Disabilities with Dr. Gary Chapman. Her blog for parents raising children with special needs and disabilities can be found at www.DifferentDream.com.

"What Do You Mean There Is A Problem With My Child"

“What do you mean there is a problem with my child?”

In some ways the parent who refuses to acknowledge their child’s special needs is harder to help than the person who blames themselves or God or the devil for the reality they are facing (see the previous articles in this series for all of these responses). Sometimes it is hard to know what to do or to say even when you have been there yourself, even when you too have wanted to deny this reality.

As a society we have become much better at giving people with special needs dignity and respect. We don’t tolerate language or statements about people with special needs that were commonplace when I was in school. All of this is a step in the right direction, but sometimes I wonder if in our desire to do better, we haven’t also made a serious mistake.

Have we made it too hard to acknowledge brokenness?

I feel for the parent who does not want to acknowledge that their child has “special needs”. I have been there. It feels like a betrayal or failure. It dashes hopes and dreams, makes us feel like we are somehow less and means admitting that we are not really in control. Even more, I feel for the child who will not get the help they so desperately need until their parents acknowledge the truth. When a parent refuses to see that their child needs help like therapy or to be in a special needs classroom, they (usually inadvertently) hurt their child. When we are so afraid of offending that we do not speak up to actually help, are we being kind?

Compassion demands that we tell the truth. No, we should not be brutal or mean spirited about it. Yes, some people delight in telling the truth to inflict pain. But we do not abandon the truth because some abuse it. Healing can’t happen until the truth is seen. Our children with special needs are broken. But that is only a part of the story.

In the Hebrew and Christian Bibles, Genesis 1 and 2 tell the story of creation. God creates a glorious universe, a world teaming with beauty and life. We are told in Genesis 1:27 that God creates human beings – male and female – in His image! He declares all creation good and places humans in the middle of a garden. He gives us purpose and companionship. He gives us Himself.

 And we mess it up. Theologians call it “The Fall”. It happens in Genesis 3–pretty much the same page as all of the good stuff that came before. Everything is affected. As one of my professors used to say, “The Fall goes all the way down.” 

The truth is that we are ALL BROKEN.

Not a popular sentiment today. On the one hand, I am encouraged by the almost gut level reaction that people have to someone being called broken. It is right and good to give everyone dignity and respect, no matter who they are, where they come from, what their status or circumstance in life or even their abilities. But that doesn’t mean we cannot or should not acknowledge true brokenness – whether it is our own or the brokenness of others.

Often, we define our entire identity around one aspect of who we are. I am part of the (fill in the blank) community. It is easy to understand why a parent would not want their child’s disability to be the defining feature of their identity. I get it. I myself have resisted being “autism dad” as a writer for well over a decade.

Here’s the truth: I am the father of an autistic child. Nathan is broken. I can’t fix that. The difference between his brokenness and mine? Most of the time I can hide my brokenness to the outside world. He can’t. But that is not the sum total or even the most important part of my identity or his. Being broken is universal, but it is the beginning of the story not the end.

When we realize that everyone is broken, we can – have to – give up the idea that we are better, or worse, than anyone else. We can give up playing pretend. We can stop curating our Facebook/Instagram perfect lives and get real. 

My identity? First and foremost, above, before and through every other aspect of me is found in the fact that I am created in the image of God and redeemed in Christ. That is good news. News beyond any trauma or disability, beyond any one aspect of who we are. And as we will see next time, it points to a better way of understanding suffering.

Kevin O’Brien is a husband, father, ordained minister, writer and volunteer theologian. He holds a Master of Divinity and Master of Theology from Liberty Baptist Theological Seminary where he won the Th.M. award in 1997. He has also done graduate work at the Institute for Christian Studies in Toronto.  Kevin worked as a brand manager on the Bible team at Tyndale House Publishers. During his time at Tyndale he has helped to develop several Bibles and has written articles which have appeared in The Way, the iShine Bible, and the Illustrated Study Bible. He also wrote a series of devotionals for WAYFM’s World’s Biggest Small Group.

Most recently, Kevin wrote an Advent devotional eBook. You can find it here. 

Kevin lives in the far western suburbs of Chicago with his wife, three children, a dog, and a cat. He would prefer to spend his time reading, writing, woodworking and watching the Chicago Blackhawks.

When Things Don't Go As Planned

It was one of those mornings. Our car was in the shop. The evening before, they called to let me know it was ready to be picked up. When they called, I asked, “Were there any other issues?” They promptly replied, “No,” and I went to pick it up the next morning, excited that we would have our car back. Twenty minutes later, as I neared home, I noticed a sound like driving over rumble strips on the side of the road, only there were no rumble strips so back to the repair shop I went.

 It would have been easy for me to turn the drive back to the repair shop into a pity party, grow angry with them for not catching the problem and to get upset about the time I had lost.

Instead, I had to consciously choose to reframe the situation. Through this process I was able to praise God that:

1. The problem occurred immediately so it was not a mystery what the issue was.

2. It didn’t happen in the upcoming weeks as we traveled for different speaking engagements.

3. Family was loaning us a vehicle so we were not stranded.

4. The shop was ethical and told me to bring the car back in immediately for them to look at it.

As I processed this, I felt the tension reduce. I was able to arrive at the shop and talk with the manager in a way that was glorifying to God as opposed to my  natural response in the situation.

While I was stressed about how the delay in schedule would impact the rest of my day, I didn’t carry the tension of anger, bitterness and resentment with me boiling under the surface, building up pressure until it exploded and later burned an innocent bystander.

This reframing is a difficult process, requires the help of the Holy Spirit and I have to take it moment by moment. In all truth, my success rate is not real high but God is gracious and it’s exciting to see growth…as incremental as it may be.

What do you have going on right now that you can reframe? Are you battling the school for services your child needs? Is there a therapy or service you want for your child, but can’t access because of the expense? Are you discouraged from constant caregiving? How would it impact  you emotionally, mentally, physically  and spiritually if you were able to reframe that situation?

“And now, dear brothers and sisters, one final thing. Fix your thoughts on what is true, and honorable, and right, and pure, and lovely, and admirable. Think about things that are excellent and worthy of praise.”

Philippians 4:8 (NLT)

Written by Jonathan McGuire

Jonathan McGuire  is  the father of two sons and the co-founder of Hope Anew, a nonprofit that comes alongside the parents of children impacted by disability on a spiritual and emotional level. You can follow Hope Anew on Facebook here.

You Can Worship How You Want

     “Praise him with trumpet sound; praise him with lute and harp! Praise him with tambourine and dance; praise him with strings and pipe! Praise him with sounding cymbals; praise him with loud clashing cymbals! (Psalm 150:3, ESV).

Our family enjoyed a wonderful summer of camping in our new Airstream trailer this summer. I have written about our experiences learning how to use and set up the trailer in other blogs, but I have not really touched on our times while at the various campgrounds. For the most part, all of the locations were quite nice and the various travelers were quite lovely people.

But having an autistic child is always a challenge when visiting new, unfamiliar locations, and being around folks who may not have an awareness of those with special needs. We really did not have any issues with kids or adults asking any questions, but that changed on our very last trip of the year.

We traveled to a small private campground a couple of hours from our home, and we arrived late on a Saturday so just had enough time to get set up and go straight to bed while under the cover of darkness. The next day we awoke and my son was his usual excited self, and my wife, wanting to give me time to shower and dress, decided to take my son on an early morning walk. As she walked through the campsites and came up to the common buildings at the front, she began to hear the beautiful sound of worship music, and decided to follow it to the source. She came upon the activity center where a Sunday church service was being held, complete with a pastor and a worship leader on piano, and rows of folding chairs. My wife decided this would be a welcome stop for them so she decided to sit for a little and enjoy some time in the Spirit.

As usual, my son loved the worship part, being engaged with the group and though being non-verbal, still made a joyful noise with his squeals and utterances. However, once the worship part ended, he began to get disregulated and as is normally the case, he began to get extremely sensory seeking, and proceeded to bang on and knock over the folding chairs. Startled and shaken, my wife reacted the way that we always do, she took my son and immediately left the space, apologizing her way through the crowd and out the door, and headed for home.

When she got home she shared her experience there and how bad she felt with our son having a small meltdown, but she also expressed how polite and respectful people were, asking her if she was ok or needed any help. She told them she was fine and thanked them, not being used to such concern from folks in public places, even at our own church services. I was grateful people were understanding, but still used to many of those interactions or comments from people, even when seemingly genuine, to just be things people say to get through the moment, and not truly intentional. But we were shocked when about less than an hour later, a small delegation of three people from the service, who also were long time campers there, came to visit our trailer. My wife must have mentioned that we were the family in the Airstream, since ours is still a fairly unique sight among other trailer styles.

The two men and a woman came in and immediately my son came to happily greet them, and they were just as glad to see him, and shared how they were just checking on us to see how we were doing. They kept speaking out their faith to us by letting us know that whatever happened was no big deal, that we were welcome there and that we would always be welcomed no matter. We thanked them for their kindness in checking in on us, and how much it meant to us that people would go out of their to make sure we were included, and suddenly our small living space was bursting with the Holy Spirit.

That morning, we just didn’t escape a challenging situation in a public place, we were actually touched by the Body of Christ in a special and unique way, and the campground just earned visitors for life.

Written by John Felageller

John lives in Northbrook, IL with his wife Elizabeth and his son Christopher (ASD), and is currently a Social Programs Manager at Total Link 2 Community in Chicago, IL.  He is a regular contributor to Key Ministry’s Special Needs Family blog, and is both a live presenter and on Key Ministry’s Facebook page. He coordinates a Special Needs Dads meet-up in his community and works with several other local Special Needs organizations that serve both parents and children.

Connect with John on Facebook here.